Evidenzbasierte Patienteninformation – dargestellt am Beispiel der Immuntherapie bei Patienten mit Multipler Sklerose

Kasper, Jürgen; Heesen, Christoph; Mühlhauser, Ingrid

doi:10.1007/s00103-009-0751-6

Cited by 4 publications

(1 citation statement)

References 32 publications

(33 reference statements)

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“…33,35 To integrate both demands, different complexity levels of EBPI should be made accessible, based on individual health literacy and needs. 36 Responsive digital technologies such as broca, which was used for levidex, offer an ideal tool for this approach. However, possibilities for personalisation within the context of digital interventions designed as a simulated conversational flow are limited.…”

Section: Discussionmentioning

confidence: 99%

‘That would have been the perfect thing after diagnosis’: development of a digital lifestyle management application in multiple sclerosis

Krause

Riemann-Lorenz

Rahn

et al. 2022

Ther Adv Neurol Disord

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Background: A multiple sclerosis (MS) diagnosis urges decision-making on immunotherapies, while persons with MS (PwMS) need to develop a coping concept in parallel. At this stage, PwMS ask how they themselves may contribute to controlling the disease. Evidence suggests that maintaining a healthy lifestyle (e.g. physical activity and stress management) is a key factor for healthy aging and preserving activity, while data on MS are complex. Objectives: Following the Medical Research Council framework, this study aimed to develop and investigate the feasibility of a new digital health application that conveys evidence-based patient information about lifestyle factors in MS and engages PwMS in relevant behaviour change techniques. Methods: Based on a digital health application promoting lifestyle management in breast cancer survivors, an MS-specific adaptation (‘levidex’) was developed. Feasibility was tested with 15 PwMS and eight MS experts. Subsequently, a six-week pilot study with eight PwMS was conducted. All participants provided feedback on practicability and acceptability via a questionnaire and took part in a semi-structured telephone interview. Levidex was revised after each test phase. Results: The final levidex tool includes 16 modules, 177 references and several other functions. Feasibility results showed that PwMS and MS experts perceived levidex as understandable (14 out of 15; 6 out of 8), trustworthy (15 out of 15; 8 out of 8), and relevant (10 out of 15; 8 out of 8). Interviews revealed potential for improvement regarding the length and complexity of some content. Piloting of the revised version confirmed good feasibility and high acceptance. Most participants felt inspired to initiate (7 out of 8) or had already implemented (5 out of 8) lifestyle changes after working with levidex. Conclusion: Results suggest that levidex is feasible and well-accepted by PwMS and MS experts. It might be a useful tool to support PwMS in adapting to their diagnosis and initiating health-promoting lifestyle changes.

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Section: Discussionmentioning

confidence: 99%

‘That would have been the perfect thing after diagnosis’: development of a digital lifestyle management application in multiple sclerosis

Krause

Riemann-Lorenz

Rahn

et al. 2022

Ther Adv Neurol Disord

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Patientenmanipulation durch Patienteninformationen

Mühlhauser

2010

Public Health Forum

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EinleitungIrreführende Patienteninformationen sind die Regel. Sie werden systematisch genutzt, um gesundheitsorientierte Maßnahmen umzusetzen. Sie können zu schwerwiegenden Trugschlüssen führen. Irreführung entsteht durch Unvollständigkeit der Information und missverständliche Präsentation von Daten. Den Bürgern fehlt die notwendige kritische Gesundheitsbildung die Botschaften gezielt zu hinterfragen. Die Folgen sind Fehleinschätzungen von Risiken und des Nutzen-Schaden Verhältnisses von Interventionen.

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Behavioral interventions in multiple sclerosis: a biopsychosocial perspective

Heesen

Köpke

Kasper

et al. 2012

Expert Review of Neurotherapeutics

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Managing uncertainty is a major challenge associated with the diagnosis of multiple sclerosis (MS). In addition to physical symptoms, neuropsychiatric symptoms are highly prevalent in this disease. Depression in particular is more common in MS than in other chronic diseases. While substantial achievements have been made in the therapy of MS and an increasing number of immunomodulatory treatments are now available, the long-term benefits of these are still a matter of debate. Importantly, while the approved therapies show good efficacy on inflammatory lesions and relapse rate, and may slow certain aspects of disease progression, improvements in function have rarely been reported. On the other hand, behavioral interventions have recently been shown to significantly improve fatigue and depression as well as motor function. In addition, recent evidence suggests that group education or face-to-face behavioral interventions may decrease inflammatory disease activity (such as relapse rate or lesion formation measured by MRI). Therefore, behavioral interventions not only ameliorate symptoms but may have the potential to modify the disease process itself.

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Evidenzbasierte Patienteninformation – dargestellt am Beispiel der Immuntherapie bei Patienten mit Multipler Sklerose

Cited by 4 publications

References 32 publications

‘That would have been the perfect thing after diagnosis’: development of a digital lifestyle management application in multiple sclerosis

‘That would have been the perfect thing after diagnosis’: development of a digital lifestyle management application in multiple sclerosis

Patientenmanipulation durch Patienteninformationen

Behavioral interventions in multiple sclerosis: a biopsychosocial perspective

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